Help with Pain
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
Help with Pain
After all this time on the board, reading others tell of their pain (and yes, pain IS associated with RLS) I have questions. I talked to Jan on the phone today (Bless you, Jan!) and we talked a little about her fibro pain. I don't know if that's what is going on with me or not. But I would like for those who suffer with pain to let me know what it is like. When I was little I had horrendous leg aches that nothing would make go away. I have suffered with them off and on for years. Now all of a sudden they are back. They are bearable but keep me awake. I used to be able to take aspirin and that would help but not now. I also have bad lower back aches and pain in my joints. Could be a touch of the flu, at least the pain in the joints. Guess time will tell on that one. There are also time when I get up in the morning that my feet are almost crippled. After I walk around awhile, it goes away. Is this what the rest of you experience? Or is it something else entirely?
I'm so glad you brought this up, because it's been on my mind, too, ironically.
Jan and I have compared notes on stiffness, though not actually "pain", I guess.
You mentioned being "crippled" for a while when you first get up. Jan and I have both said that if we sit for awhile (especially on a hard surface or an awkward position), we are super-stiff when we first try to move again. But it "works out" as we keep moving.
I have many symptoms of early stages of osteoarthritis, so I have assumed that that that was where my stiffness was coming from. The stiffness is mostly in my "big joints" like my hips when it's from inactivity (I also have pain and swelled nobs on my finger joints, and achey foot joints.)
I have read quite a bit about fibromyalgia, and I do not think that I have that, based on the diagnostic information I've found. But I'd be quite interested to hear what others post in reply to your inquiry, because if we learn more about the patterns of pain and stiffness of other members, it may give clues to which symptoms are related to which conditions.
Take care, Rubyslippers, and thanks for bringing this subject up.
Hugs-- Sara
Jan and I have compared notes on stiffness, though not actually "pain", I guess.
You mentioned being "crippled" for a while when you first get up. Jan and I have both said that if we sit for awhile (especially on a hard surface or an awkward position), we are super-stiff when we first try to move again. But it "works out" as we keep moving.
I have many symptoms of early stages of osteoarthritis, so I have assumed that that that was where my stiffness was coming from. The stiffness is mostly in my "big joints" like my hips when it's from inactivity (I also have pain and swelled nobs on my finger joints, and achey foot joints.)
I have read quite a bit about fibromyalgia, and I do not think that I have that, based on the diagnostic information I've found. But I'd be quite interested to hear what others post in reply to your inquiry, because if we learn more about the patterns of pain and stiffness of other members, it may give clues to which symptoms are related to which conditions.
Take care, Rubyslippers, and thanks for bringing this subject up.
Hugs-- Sara
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ViewsAskew
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The stiffness is a problem for me, too, but it always works out shortly. Just assumed it was an aging thing (ugh, did I say that? I'm NOT old 
). I get different pain, though. When I have periods of really poor sleep, I get muscle spasms in my shoulders, neck, and lower back. This started at least 10 years ago. At first (was in my neck the first time) it was diagnosed as torticollis (sp?) but I don't think it is as it changes location. It isn't fibro, either. But it is terribly painful and is related to my sleep quality. They can last for days, too.
). I get different pain, though. When I have periods of really poor sleep, I get muscle spasms in my shoulders, neck, and lower back. This started at least 10 years ago. At first (was in my neck the first time) it was diagnosed as torticollis (sp?) but I don't think it is as it changes location. It isn't fibro, either. But it is terribly painful and is related to my sleep quality. They can last for days, too.-
cornelia
pain
Yes, I have pains too. When I get up I feel as an 90-year old person. The pain is from the RLS: muscle-pains in neck, shoulders and arms. After a hot shower and some walking they slowly disappear.
And stifness too: but that is from the Parkinson meds I think; they tend to do that.
Corrie, living like an 80-year old person in daytime!
And stifness too: but that is from the Parkinson meds I think; they tend to do that.
Corrie, living like an 80-year old person in daytime!
Fibro vs. RLS
Hi, it's Jan
Just thought I'd clear up a few things. As you know, I've had RLS a long time and I know what it feels like. The pain I'm experiencing is not from RLS. It is a very deep, burning, "down in your bones" pain that I have never had with RLS. It started in my legs and feet, then moved up to my arms, elbows, wrists, hands--then shoulders, back and neck. On a scale of 1-10, when I am in a "flare", the pain is an 8. It feels nothing like RLS or the pain from RLS. And, the stiffness is not just when I'm sitting on the floor in a funny position. It occurs even after sitting in my computer chair for no more than 10 minutes, or when I get out of the car after driving across town. It is especially bad after sleeping. The symptoms of fibro are: pain, as I described it; sleeplessness; morning stiffness; numblness or tingling of the extremities (which I have experienced); temp. sensitivity; cognitive and memory problems, also called "fibro fog". I left out irritable bowl syndrome and restless leg syndrome. I experience all of the above. I am always cold, now. Never was before--just the opposite. I wish I could described the pain better, but it is SO different from the painful form of RLS. It even hurts to turn over in bed. And, the crippling feeling in my feet lasts up to 2 hours in the morning. I have IBS and fibro fog also. Hope this helps.
Jan
P.S. I've taken Mirapex, which is a Parkinson's med, for at least 5 years, and have never had stiffness as a side effect. Maybe it effects other people that way, but never has me.
Just thought I'd clear up a few things. As you know, I've had RLS a long time and I know what it feels like. The pain I'm experiencing is not from RLS. It is a very deep, burning, "down in your bones" pain that I have never had with RLS. It started in my legs and feet, then moved up to my arms, elbows, wrists, hands--then shoulders, back and neck. On a scale of 1-10, when I am in a "flare", the pain is an 8. It feels nothing like RLS or the pain from RLS. And, the stiffness is not just when I'm sitting on the floor in a funny position. It occurs even after sitting in my computer chair for no more than 10 minutes, or when I get out of the car after driving across town. It is especially bad after sleeping. The symptoms of fibro are: pain, as I described it; sleeplessness; morning stiffness; numblness or tingling of the extremities (which I have experienced); temp. sensitivity; cognitive and memory problems, also called "fibro fog". I left out irritable bowl syndrome and restless leg syndrome. I experience all of the above. I am always cold, now. Never was before--just the opposite. I wish I could described the pain better, but it is SO different from the painful form of RLS. It even hurts to turn over in bed. And, the crippling feeling in my feet lasts up to 2 hours in the morning. I have IBS and fibro fog also. Hope this helps.
Jan
P.S. I've taken Mirapex, which is a Parkinson's med, for at least 5 years, and have never had stiffness as a side effect. Maybe it effects other people that way, but never has me.
No one is alone who had friends.
Pain, We've Met
Hello to ya Ruby,
Yup, Pain and I have met. I'd say were friends, but more like an annoying neighbor that refuses to move.
When I was younger my pain was only in my legs. By the time it would wake me up my thighs and knees were drowned in a deep ache. Felt like it was in the bones, but it made the muscles hurt too. I would normally run for a hot water bottle.... and go back to bed. Like I've climbed a mountain all day, the muscles are tight and strained.
As I've age I noticed that when I'm on my period (excuse me men) the cramps travel down the tops of my thighs. Again, a deep pain that topical stuff won't touch. Things like Bengay, Aspercreme, Icy Hot......etc.
If you have had a baby or had the stomach flu, it's that same cramping. Not only a level of "kill me" like childbirth, but it's a pulling, tightening feeling. Now with the right medications......I can tell you that it starts within my right knee. a slight ache or pain like someone is trying to bind it to tight. Mine travels down my calf to my ankle and foot. If it goes uncontrolled, it spreads to my left leg, then my hips. My hips feel as though they are out of place. Achey and unstable. Movement helps. My back seems to feel stressed, like I've over done it that day. Neck just pulls, tighter and tighter, until I have no muscle tone past rock hard and not moving.
My feet feel broken after the wrong shoes or too much walking.
My arms are new in the past two years. It borders on asleep to painful, but how to tell you? Maybe tingles, no more painful, nut it does feel eletric.
Any place that has has soft tissues damage is always open to hurt first. Any place that has been damaged will hurt.
This is tough, to explain isn't it? I use any trick I can find and try to remember my medication early enough, before everything kicks in.
Love and hugs.
Yup, Pain and I have met. I'd say were friends, but more like an annoying neighbor that refuses to move.
When I was younger my pain was only in my legs. By the time it would wake me up my thighs and knees were drowned in a deep ache. Felt like it was in the bones, but it made the muscles hurt too. I would normally run for a hot water bottle.... and go back to bed. Like I've climbed a mountain all day, the muscles are tight and strained.
As I've age I noticed that when I'm on my period (excuse me men) the cramps travel down the tops of my thighs. Again, a deep pain that topical stuff won't touch. Things like Bengay, Aspercreme, Icy Hot......etc.
If you have had a baby or had the stomach flu, it's that same cramping. Not only a level of "kill me" like childbirth, but it's a pulling, tightening feeling. Now with the right medications......I can tell you that it starts within my right knee. a slight ache or pain like someone is trying to bind it to tight. Mine travels down my calf to my ankle and foot. If it goes uncontrolled, it spreads to my left leg, then my hips. My hips feel as though they are out of place. Achey and unstable. Movement helps. My back seems to feel stressed, like I've over done it that day. Neck just pulls, tighter and tighter, until I have no muscle tone past rock hard and not moving.
My feet feel broken after the wrong shoes or too much walking.
My arms are new in the past two years. It borders on asleep to painful, but how to tell you? Maybe tingles, no more painful, nut it does feel eletric.
Any place that has has soft tissues damage is always open to hurt first. Any place that has been damaged will hurt.
This is tough, to explain isn't it? I use any trick I can find and try to remember my medication early enough, before everything kicks in.
Love and hugs.
Jan--
Thanks for clarifying your symptoms. Sorry I misremembered our conversation. I knew that the PAIN was on-going, but when we were talking that time I had been laying on the floor painting my kitchen cabinets, I had gotten the idea that some of your stiffness was easier to "walk off" than it is.
To clarify mine, I can get stiff from a very short period of time in a position, if it's the "wrong" position for some reason (any reason, evidently!
) And I have to work at not walking like an old lady for a few minutes, but it does subside if I keep moving.
The pain that I get, which I believe to be most consistent with osteo-arthritis, not RLS or fibro, does not improve with movement. Only with warmth, rest, arnica cream or time.
Interesting discussion, everyone.
Sara
Thanks for clarifying your symptoms. Sorry I misremembered our conversation. I knew that the PAIN was on-going, but when we were talking that time I had been laying on the floor painting my kitchen cabinets, I had gotten the idea that some of your stiffness was easier to "walk off" than it is.
To clarify mine, I can get stiff from a very short period of time in a position, if it's the "wrong" position for some reason (any reason, evidently!
) And I have to work at not walking like an old lady for a few minutes, but it does subside if I keep moving.
The pain that I get, which I believe to be most consistent with osteo-arthritis, not RLS or fibro, does not improve with movement. Only with warmth, rest, arnica cream or time.
Interesting discussion, everyone.
Sara
My Symptoms
Hi Sara, it's Jan
No problem! I think when we had our convesation, it was probably before I got worse. So, I'm not sure you did misunderstand! I jus wanted to clarify for EVERYONE, not just you.
I'm doing pretty good, but, even though doctors say FMS isn't progresive, according to many people I've talked to, it is progressive for most people. In fact, 99% of the people I've talked to who have FMS have seen it progress--sometimes quickly--sometimes more slowly.
I'm not thinking I'll end up really bad. But, like RLS, I know the best way to arm myself is to educate myself as much as I can about FMS. And, that's what I'm doing. I've learned a lot from this board!! I never would have done that before--I would have just blindly trusted my doctor. And, remember, he admitted he doesn't know that much about fibro. I'm not sure he would have admitted that if I had not had questions prepared to ask him.
Take care, Sara!!!
Jan
No problem! I think when we had our convesation, it was probably before I got worse. So, I'm not sure you did misunderstand! I jus wanted to clarify for EVERYONE, not just you.
I'm doing pretty good, but, even though doctors say FMS isn't progresive, according to many people I've talked to, it is progressive for most people. In fact, 99% of the people I've talked to who have FMS have seen it progress--sometimes quickly--sometimes more slowly.
I'm not thinking I'll end up really bad. But, like RLS, I know the best way to arm myself is to educate myself as much as I can about FMS. And, that's what I'm doing. I've learned a lot from this board!! I never would have done that before--I would have just blindly trusted my doctor. And, remember, he admitted he doesn't know that much about fibro. I'm not sure he would have admitted that if I had not had questions prepared to ask him.
Take care, Sara!!!
Jan
No one is alone who had friends.
Jannie--
that's why I'm glad you clarified... the more specific we can be, I think, the better for comparing notes and learning what to look for.
I had been meaning to share with you something tht happened the other day, and I haven't had a chance. You know that my husband is very supportive, but obviously doesn't quite "get" the extent to which RLS can progress. He's said, "Everybody gets that when they're tired" (and you know Becat has theorized that he probably actually has RLS, and I'm wondering if she's right!)
But the other night, I can't recall why, fibromyalgia came up. I said something low-key about it being a rotten disease to get, and he really spunked up right away... actually sat up straighter on the couch and looked right at me, and said, "That can be a really horrific thing, people really suffer with that!"
It surprised me a bit, not because he's not a compassionate person, individually-- if he knew you and what you were gong through, he'd be the biggest darling to you and very sympathetic. But he doesn't know any of the people I know with fibro, etc., and there IS still often a feeling in the general public (and some of the medical community) that fibro and RLS and CFS and some of those conditions are maybe not as serious as their sufferers might indicate.
Anyway, I said to him that you were just diagnosed and that quite a few RLS sufferers seem to end up with fibro, too. I could see him think that through, and although he didn't say anything, I thought that it made an impression on him, which is a good thing... especially since there are three of us in the family with RLS, and the Lord only knows what else might be ahead for any of us.
Hugs to you. Sara
that's why I'm glad you clarified... the more specific we can be, I think, the better for comparing notes and learning what to look for.
I had been meaning to share with you something tht happened the other day, and I haven't had a chance. You know that my husband is very supportive, but obviously doesn't quite "get" the extent to which RLS can progress. He's said, "Everybody gets that when they're tired" (and you know Becat has theorized that he probably actually has RLS, and I'm wondering if she's right!)
But the other night, I can't recall why, fibromyalgia came up. I said something low-key about it being a rotten disease to get, and he really spunked up right away... actually sat up straighter on the couch and looked right at me, and said, "That can be a really horrific thing, people really suffer with that!"
It surprised me a bit, not because he's not a compassionate person, individually-- if he knew you and what you were gong through, he'd be the biggest darling to you and very sympathetic. But he doesn't know any of the people I know with fibro, etc., and there IS still often a feeling in the general public (and some of the medical community) that fibro and RLS and CFS and some of those conditions are maybe not as serious as their sufferers might indicate.
Anyway, I said to him that you were just diagnosed and that quite a few RLS sufferers seem to end up with fibro, too. I could see him think that through, and although he didn't say anything, I thought that it made an impression on him, which is a good thing... especially since there are three of us in the family with RLS, and the Lord only knows what else might be ahead for any of us.
Hugs to you. Sara
I'm Glad Your Husband is Getting it!
Hi Sara--
I'm so glad your husband gets it, Sara. As you know, mine was slow in wanting to understand, but I think he's finally realizing what might be ahead of us. He shows it in actions (helping me steady myself when I've been sitting for awhile, e.g. movie theater) and he talks about it more.
I think it's a scary thing for most people to face. I know it isn't cancer (as we've always said of RLS) and it's not MS, but I know people who do really suffer. Their lives are changed completely. That doesn't mean I'll get that bad, but I think we should at least know what MIGHT be ahead. That doesn't mean we're "dwelling on it" or "thinking too much about it" as my neuro said. I live every day just as if I didn't have it yet. It's just that some days, I can't do what I could do even 6 months ago. But, don't they say "forewarned is forearmed". Or something like that. Ha!
Anyway, hugs to you too!!!
I'll be talking to you soon.
Love ya
Jan
I'm so glad your husband gets it, Sara. As you know, mine was slow in wanting to understand, but I think he's finally realizing what might be ahead of us. He shows it in actions (helping me steady myself when I've been sitting for awhile, e.g. movie theater) and he talks about it more.
I think it's a scary thing for most people to face. I know it isn't cancer (as we've always said of RLS) and it's not MS, but I know people who do really suffer. Their lives are changed completely. That doesn't mean I'll get that bad, but I think we should at least know what MIGHT be ahead. That doesn't mean we're "dwelling on it" or "thinking too much about it" as my neuro said. I live every day just as if I didn't have it yet. It's just that some days, I can't do what I could do even 6 months ago. But, don't they say "forewarned is forearmed". Or something like that. Ha!
Anyway, hugs to you too!!!
I'll be talking to you soon.
Love ya
Jan
No one is alone who had friends.
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
I try not to borrow trouble whenever possible. But after talking to Jan, I went and looked up fibromyalgia on the web. There are certainly differences in the symptoms between RLS and fibro but there are a lot of similarities. On almost every site I checked out, RLS was a symptom of fibro. Interesting, isn't it? Tingles, numbness, mind fog, sleep-deprivation, pain...and with both there are no tests to diagnose the problem. With fibro there are pressure points to check and if you are sensitive in so many of them, it's usually a good indication that you have fibro. But in talking to RLSers before looking into this, many talk of pain in these same areas. Don't get me wrong, they are not the same problem and if you have one you may not have the other. But it really makes you think there could be a definite link there. I haven't done enough research to know what the probable causes of fibro are so don't know if they are liked with ferritin levels, etc. And this may not even be the place to discuss this. I've just been in such pain lately and nothing seems to touch it. It isn't unbearable but definately not nice. Keep the info flowing, it sure helps to know I have friends who care.
Rubyslipper--
I think Jan's right, and forewarned is forearmed... that's not borrowing trouble. When something's wrong in our bodies, we OWE it to ourselves and those who love and depend upon us to consider possible causes.
I don't know much more about fibromyalgia than you've mentioned. BUT, it seems like quite an interesting "coincidence", if that's all it is, that so many people with RLS seem to have fibro and vice versa.
Didn't Jumpy list the stats for that part of the survey in his presentation? Certainly if you read the bios here (and from a few other people I know personally) there's a intriguing incidence level of fibro and RLS occuring together.
Take good care, and I'll drop you a note this weekend.
Sara
I think Jan's right, and forewarned is forearmed... that's not borrowing trouble. When something's wrong in our bodies, we OWE it to ourselves and those who love and depend upon us to consider possible causes.
I don't know much more about fibromyalgia than you've mentioned. BUT, it seems like quite an interesting "coincidence", if that's all it is, that so many people with RLS seem to have fibro and vice versa.
Didn't Jumpy list the stats for that part of the survey in his presentation? Certainly if you read the bios here (and from a few other people I know personally) there's a intriguing incidence level of fibro and RLS occuring together.
Take good care, and I'll drop you a note this weekend.
Sara
Pressure Points for Fibromyalgia
Hi, it's Jan
I belong to another site for fibromyalgia, a little bit like this one, but our site is much better! Seriously!! Anyway, I thought the following information was very interesting and thought I'd pass it on.
Regarding pressure points, I read the following. It is phosphate debris stored in soft tissue which causes the tender points. One person can have this happen very slowly so that it takes years for these areas to get very tender.
According to Dr. St. Amand's book, "What Your Doctor May Not Tell You About Fibromyalgia," you do not have to have 11 of 18 pressure points to have fibromyalgia.
I thought I'd also comment on the connection between RLS and fibro. I would say at least 60% of the people on that site also have RLS. Some had RLS before developing fibro, and, interestingly enough, some developed RLS after they were diagnosed with fibro. There is a definite link. However, some people do not have RLS, and are well into their middle age (50-60), and have no early symptoms of RLS at all.
I'm certainly no expert. I have just been reading a lot about fibro and it's connection wtih RLS. The site I am referring to is www.immunesupport.com. You do not have to have fibromyalgis to join the site. It's all so interesting, isn't it?
Jan
I belong to another site for fibromyalgia, a little bit like this one, but our site is much better! Seriously!! Anyway, I thought the following information was very interesting and thought I'd pass it on.
Regarding pressure points, I read the following. It is phosphate debris stored in soft tissue which causes the tender points. One person can have this happen very slowly so that it takes years for these areas to get very tender.
According to Dr. St. Amand's book, "What Your Doctor May Not Tell You About Fibromyalgia," you do not have to have 11 of 18 pressure points to have fibromyalgia.
I thought I'd also comment on the connection between RLS and fibro. I would say at least 60% of the people on that site also have RLS. Some had RLS before developing fibro, and, interestingly enough, some developed RLS after they were diagnosed with fibro. There is a definite link. However, some people do not have RLS, and are well into their middle age (50-60), and have no early symptoms of RLS at all.
I'm certainly no expert. I have just been reading a lot about fibro and it's connection wtih RLS. The site I am referring to is www.immunesupport.com. You do not have to have fibromyalgis to join the site. It's all so interesting, isn't it?
Jan
No one is alone who had friends.
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
You know what is truly strange? My sister was just diagnosed with fibro this past week. Now she's trying to get me in to see her doctor. Can fibro be hereditary? She has been in such pain for the past couple of years so I'm glad she is getting help. I'll go on the support group you suggested, Jan to see if I can get info for her. Thanks.